Erieon's Story: Parent's Letter Project Meconium aspiration (ECMO), hydrocephalus, and seizure-like activity- Erieon's mom

On October 7, 2008, I found out I was pregnant with my second child, seven years after my daughter. I had a healthy pregnancy, went to all my appointments, ate right, did light exercise, and I slept well. On May 17, my son was supposed to be born, however he didn't come until May 22. My water broke at 4 pm. This was supposed to be a happy time for me. However, it wasn't. I noticed my water was of color so I went straight to the hospital. My contractions had now become closer together. When I first got to the hospital it took about 30 minutes to get a room, which delayed my delivery even more. I was two centimeters dilated when I finally got a room. It was now 6:30 pm and my contractions had taken over me, I was in so much pain. I was 10 centimeters dilated and already pushing when the nurse checked on me- there was no time for medicine.

At 7:43 pm, my son was born 8 pounds, 7.5 ounces. When Erieon entered this world he made one loud cry and after that I never heard him cry again for three months. I was told that he needed help breathing and that something was wrong with his heart. He needed to be sent to Children's National. I cried and I wondered why, why me? Why him? Why us? I saw him for a second before he was taken to the Neonatal Intensive Care Unit (NICU) at Children's National.

Within four hours of him getting there, I got a call that I will never forget. The man on the other line said that Erieon wasn't going to make it. I wanted to scream, I wanted to run and not turn back. I was in the hospital all alone- my mom had left, my sister had left, and my son's father just didn't care. I was alone. The man on the other line explained to me about the ECMO machine and that my son needed to be put on it as soon as possible. Two hours later I got a call again from the man on the other line saying I needed to get there as soon as I could because he wasn't looking good.

I packed my stuff up, my doctor didn't want to release me (although even if she didn't, I was out of there). (For your own safety, it is not recommended to leave the delivery hospital postpartum until cleared by a health care provider to do so.) Less then 14 hours after having my son I was at Children's National. What was normally a 45 minute ride took us less than 30 minutes to get there. I felt lost, afraid, depressed, stressed, and most of all I felt like I was losing my mind. I did everything correctly so how could things go so wrong for us? I wasn't allowed to see him yet because his room wasn't ready for me. About 10 minutes later I was allowed to see my son. Everyone kept asking if I wanted a wheelchair to go back but I said, \"no,\" I wanted to walk back there on my own. I never looked in any of the other rooms as I walked down the hall to my son's room.

I stood about 10 feet away from his room, never entering because I felt I was to blame for him being there. His room had so many machines and all I noticed was this little baby laying in the bed with all of these tubes coming from everywhere. I walked away, never entering his room. I went back to the front and asked my mom and aunt to come back to see him, but before I could take them back, I lost it. I cried and cried and cried some more. I felt sick to my stomach. I kept saying "That's not my baby!" I yelled at God, I yelled at myself. It took me about 20 minutes to get up the courage to finally walk back to my son's room to meet with the doctors and nurses.

He was placed on ECMO, a cooling pad, ventilator, and isolator. He was given a 50/50 chance. Somehow I knew he was in good hands, and if he wasn't supposed to be here then God would just take him. However, 12 days passed. Erieon was on full bypass when the doctor told me that he had a stroke (there was a hemorrhage on his left side). Erieon had to be pulled from everything because he wasn't going to survive. I was hearing those words, "not live," "not survive." I cried and I wanted to go with him. He was placed in my arms for the first time and I sang to him "it ain't over until God says its over." Well, Erieon survived it all, and he is now 14 months old. He stays sick a lot but I wouldn't have it any other way. He was released from the hospital July 6, 2009, and sent to a pediatric center until August 5, 2009. He was released a day after my birthday (what a birthday gift).

I went to neurosurgery for a follow-up visit only to learn that his lateral ventricles kept filling up, so on October 12, 2009, Erieon received a VP shunt on his left side. I saw a change in him less then 24 hours after it was placed. He was holding his head up on his own, which he didn't do because his head was heavy. Now looking at him you would never know what he has been through. He is very active now. I quit my job to stay at home with him full time only to return to school. With the help of my family I made it. With the help of the wonderful staff at Children's National and God's work, Erieon made it.

The NICU staff were wonderful to me. On days that I didn't go home, which were the first few days, they made sure I was taken care of- that I ate and had somewhere to sleep because I would just sit there in the rocking chair and just look at him. I wouldn't really leave his room at all. Eventually I went home because I had another child at home who needed me. However, I wouldn't change what I have been through for the world. It made me stronger as a person, especially as a single mother. I made conversation with other parents that were in the waiting area so they also helped make my situation a little better. My daughter was always welcome in her brother's room. On her seventh birthday, a few of the nurses got together to sing to my daughter for her birthday. It brought tears to my eyes because they had became my support system, my family, and my friends.

Sincerely,

Erieon's mom, Ebone

Treatment Team

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